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Curves ahead road sing

Like dangerous curves on a mountain road, no one knows what to expect from Alzheimers.

Do women change dramatically once Alzheimer’s begins its attack on their brain?  Rose and my mother, Irene, remained gentle people, but I don’t believe that’s always the case.  I was told of one woman suffering with AD who seemed to have the strength of a lion.  When she was provoked to anger, the adrenaline really began to pump.  Reaching over the rail of her hospital bed, the distraught victim picked up a nearby chair and hit her attending husband with it.  Quoting my friend Madalyn once again, “They’re all different.”  It would have been interesting to know if that “hearsay” patient was a violent person before AD.  In any event the family and I were grateful that the two mothers in our lives were not combative.  Perhaps I should say there was no occasion to thoroughly test their defenses, and that’s always a good thing.

Both women were cognizant of gratitude, and always managed to say, “Thank you,” for favors and services received.  There was a sweetness which remained as part of their personalities, along with other facets of who they had been before AD.  Their memory was stolen, lost in the shadows making us strangers to them, more than them becoming strangers to us.   The changes taking place so slowly it’s often difficult to recall exactly when they began.

With Rose it was her forgetting that we all noticed first.  Ken would call to ask if she and Dad were going to be home as we were planning to visit.  “Oh, yes,” she answered, “we’ll be home all afternoon. Please come.” When we arrived they were gone.  Rather than drive the 30 miles return trip we waited believing they were probably at the store.  Sure enough, they soon returned with Rose asking why we hadn’t called to let them know we were coming.  We made up some transparent excuse and enjoyed our visit.  She did, however, remember telephone numbers.

“Mom fills my answering machine with one call after another,” Loretta complained as we talked about Rose’s inability to remember her daughter was at work during the day.  When the machine no longer picked up, Rose would call me.  We talked for a while, her asking the same questions with me giving the same answers, and then said goodbye.  Ten minutes later the phone would ring again and, sure enough, it was Rose.  Over and over again, the routine continued until, for my own sanity, I had to let the calls go to the answering machine.  Thirty five years ago, the entire AD experience was new to all of us.  We were all learning, but still in a state of wonder as how to manage and get some constructive advice.

Our daughter, Debbie, came with me one day to visit her grandmother.  Rose was looking at an old photograph album.  With Debbie sitting by her side, Rose looked at the pictures naming her brothers, sisters and friends from the distant past.  Over and over she told the same stories turning the pages back into a circular motion with no beginning and no end.  It was only when Debbie laid the book flat allowing the album to close that brought the book and the stories to a natural end.  Rose read the newspaper the same way —  always stopping and reading aloud an article of interest  (the same ones each time she rotated the paper) over and over until she grew tired and something else sparked her curiosity .  Little by little we began to put the mystery pieces together.

Following Nick’s passing we realized Rose was not only forgetful, she was becoming more and more confused.  The TV dinners we bought had worked for the two of them in the past, but alone she found the boxed meals of no value.   Peeking inside, Rose sampled the contents; the food was tasteless and cold.  She rejected the entire package except for the applesauce, which she ate, leaving the rest of the soggy dinner in the refrigerator, and then placing another frozen meal on the counter to thaw.  Even with my constant visits and Loretta living close by, we realized Rose could no longer live alone.

With my mother, Irene, it was her inability to listen that was one of the first signs she was changing.  She had been a wonderful conversationalist; not only a good talker, but a great listener as well.  Spending time with her, before AD began, was a joyful experience where we could exchange thoughts, ideas and ideals often delving into deep – sometimes controversial subjects – but our exchange was that – an exchange.  It was never an offense/defense debate, merely good conversation between two grown people with each leaving the other a little food for thought to consider until next time. I found the time spent always something to look forward to, but when AD arrived, she stopped listening.  There were no more inspiring tidbits from years of experience for me to take home and no more solid advice.  Her conversations no longer made a point, words became just words and when I spoke up she interrupted as if she were spending time with someone else – or possibly her mind was somewhere else.

Even if no one was with her she often droned on and on without end.  One evening, during dinner, she chattered while the rest of the family ate — her plate nearly untouched.  Finally, my father murmured, “Irene!  Please just be quiet and eat your food.”  She took a few bites then went right back to her endless jabber expressing her rambling thoughts.

Once Alzheimer’s has become an unwelcome part of a family — coming at will – it takes up permanent residence departing only when its victim passes on to a better place.  However, watching for a return visit in other family members becomes second nature to the survivors.  So it was that my heart stopped as Ken and I stood on a grassy knoll where spring-like water gurgled from the ground, and where we had been several times before.  “I have never been here in my entire life,” he claimed after I had mentioned that it looked the same as last time we visited.  I knew then AD had arrived again, its slime once more creeping into our lives like wisps of fog along the shore.  No one’s road signs are the same, personalities become altered, and relationships change.  I go back to my friend Madalyn and her reminding me that Alzheimer’s is different for everyone, yet the end results are, unfortunately,  identical:  No one has ever recovered from the disease.

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risks ahead

There are many risks ahead for both caregivers and victims of Alzheimer's.

“Everyone is different,” said my friend, Madalyn, whenever I tried to compare Ken with her husband, Darwin, whose body succumbed to death from its own ills even as his brain deteriorated with Alzheimer’s. Darwin developed AD a few years before Ken so I suppose it was natural for me to look for some kind of gage to compare their journeys. What I was to learn, though, is that AD does not follow a precise pattern like the common cold which is usually gone in two weeks – or 14 days – if you take good care of yourself: a solid time frame if there are no complications. I wanted something like that: road signs, directions and distance as my gage so I could be better prepared for what was to come. AD doesn’t work that way. Rather than gages, I got stages: mild, intermediate and severe cognitive loss, and that’s about as good as it gets even though it still doesn’t allow us, caregivers and family, to determine the approximate sickness location until the evidence is blatant. The brain and its deterioration process are still too much of a mystery.

As we watch our loved ones slip further and further into the depths of The Devil’s disease we can only guess – with input from the neurologist — at the three stages, and when they slip from one into the other there is not much of a sign – nothing dramatic – until one day you realize the patient has moved from mild to intermediate, and somewhere down the line to severe. And in observing the changes, I have come to agree with Madalyn. Everyone is different. So is the first tale-tale sign that something may be going wrong with someone we love.

Ken’s mom and dad were our first experience with Alzheimer’s, but as I have mentioned before absolute diagnosis in the late 1970s could only be determined with an autopsy. None of our medical people suggested it be done after they passed, nor did we make the request. However, that was all right because we didn’t need absolute proof; we knew what we had witnessed. An enemy from within had destroyed their brain and it wasn’t as simple as senility or old age. It’s now, in retrospect, that I search my own memory in an effort to recall some of those first signs which may have hinted to what awfulness lay ahead.

UNREASONABLE: In many relationships unreasonable would be a shot in the dark as far as determining a disease such as Alzheimer’s. Ken’s father, Nick, could be a stubborn man, even unreasonable at times, being the patriarch of the family with a lifetime of independence and dogged responsibility, a world traveler, eight years in the Marines, a strong union member, leader and officer he still managed to remain open for discussion. Then he began to change. The episode I remember, which was beyond reason, had to do with the simplicity of watching television during the Summer Olympics somewhere in the mid to late 1970s.

“What are those young women wearing,” he complained while watching the gymnastic performances. “They may as well be naked. You would never see young women from Yugoslavia wearing something like that.”

Tito was still in power at the time, and while Nick hailed from an area which had been part of Austria, it became part of the new state under Tito. Therefore, 60 years after his immigration he considered himself from Yugoslavia, and was proud of the modesty and decorum of the country’s women – not like the shameless women from other nations, including the U.S.A.

“Dad,” protested Ken, “Yugoslavia is participating in this segment of the Olympics and all of the young women are wearing body suits. You’ll see that when Yugoslavia’s team competes.”

“Never!” grumbled Nick. “Our young women would never dress like that.” Seeing was not believing; Yugoslavia’s team appeared in body suits and participated. Nick was unaccepting saying they must be interlopers, not really from his former country. Ken’s further discussion was waved aside as Nick sliced his hand through the air ending Ken’s participation.

Even though the program had moved on to other events, Nick wouldn’t let the lack of modest attire go. Gymnastics were forgotten, but immodesty prevailed in many forms including swim suits. Ken and I talked about it on the way home, remarking how stubborn and set in his ways he was getting, and now he was to the point where no one could tell him anything. Nothing was up for discussion. He knew it all and his word was law. It was only in retrospect and continuing evidence that we had to accept as fact that something was happening to the man we had known so long. His mind was no longer functioning as it once did.

“You don’t know anything.” “Leave that alone.” “Don’t let the boy (our grandson) do that. He’ll get hurt.” “Leave me alone.” “No! I don’t need to shower.” “I don’t have to change my clothes. They’re not dirty.” “Put the lamps on the floor. If we have an earthquake they’ll crash through the window.” “I wear my coat and hat in the house because I might get cold.” “They tricked me so I lost my driver’s license.” No matter how we tried talking with him, Nick became more and more confused and unreasonable.

The diagnosis of AD was ours and arrived at some years following his death. It quickly surpassed what Rose was suffering from, and yet we still didn’t know what it was, nor did we know what to do. Wearing too many clothes, he collapsed on hot days and was taken to the hospital with the paramedics explaining he had become overheated. The doctors determined he was just getting old and demented, suggesting we find a good care facility for him. We did. He died a week later.

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